I've been living with ALS for nearly a decade. I consider myself to be incredibly fortunate to still be living a fulfilling life when so many of us pALS have such a different experience with this cruel disease. A few months ago I participated in a Day of Remembrance presentation, where we honor all of the people lost in the previous year to ALS. The event is a powerful reminder of how ALS robs so many amazing people of leading a full life. In my nine years living with ALS I've seen far too many of those people. It got me thinking about some of those who I've met in this latest chapter of my life.

People like Roger and Mark , both otherwise healthy vetrans, who I met shortly after my diagnosis at a stem cell presentation. They were walking and talking, just like me at the time. Now they're gone.
I met Ryan Farnsworth at a poetry reading he headlined at an ALS Network function. He read from his book of poetry, and as a group we did some meditation. We bonded immediately, and I went up to Sonoma to take an outing with him shortly after, with him in his chair, and me on my Segway. A few weeks later he was gone.
I met Kevin Heller at a Giants ALS Day. He was hard to miss, with his bold military manner. He had just been diagnosed, yet was focused on helping me. We began a meaningful correspondence, and I came to admire him greatly. His rapid disease progression was difficult to witness.
And then of course, there's Matt Chaney. He has been my beacon of hope all of these years, having managed to live with this disease for more than two decades. He was our village elder. The wise man. I've taken note of Matt's ways and will strive to follow his lead. He'll be sorely missed, and always be remembered.
All of you who give annually are helping move us forward in the quest to end this cycle of loss. We will get there someday, and caring people like you are a massive part of the fight. Your efforts to stop this cruel disease are hugely appreciated!

Please consider joining us in Napa on September 14th for an uplifting day, including riding or walking, live music, great food and drink, and a crowd of amazing people!

Thank you, and please remember: Let's cure ALS together.

If you have a few minutes to spare, please watch this video made by my friend Lauren about my journey:

https://vimeo.com/433603445

Thanks so much and go team (s)Miles!!

Miles